Fear of Recurrence for Breast and Ovarian Cancer

SurvivorsA “Fear Management” (FM) Toolbox

Wendy G. Lichtenthal, PhDAssistant Attending Psychologist, Department of Psychiatry & Behavioral Sciences

Memorial Sloan Kettering Cancer Center

SHAREOctober 6, 2016

Why are you here today?

Because This. Is. Hard.

Overview

• What we know about fear of recurrence

• Our group’s efforts to reduce fear of recurrence

• What you can do for “fear management” (FM)

Fear of Cancer Recurrence:Survivors’ Most Common Concern

• Rates range from 26% to as high as 99%, depending on measure used and group being examined

• Fear commonly persists: even 5 years post-diagnosis, 70% -82% of cancer survivors may still experience fear of recurrenceAmerican Cancer Society, 2007; Baker et al., 2005; Cappiello et al., 2007; Hewitt et al., 2006; Hodgkinson et

al., 2007; Johnson Vickberg, 2001; Koch et al., 2014; Mast, 1998; Mishel et al., 2005; Simard et al., 2013; Tewari &

Chagpar, 2014

What do cancer survivors fear? It varies from one person to another.

• Chemotherapy• Surgery• Radiation• Hospitalization• Physical changes• Loss of hair • Emotional distress• Pain• Advanced disease• Suffering of loved ones• Death

Johnson Vickberg, 2001

Chemotherapy...worrying about my family…

Higher levels of fear of recurrence

can be impairing• Associated with depression and

reduced quality of life

• Associated with increased body monitoring, medical visit anxiety, and general preoccupation with health

Alfano & Rowland, 2006; Dandenau et al., 2007; Eismann et al., 2010; Hodgkinson et al., 2007; Koch et al., 2014; McEwen, 1998 ; Tewari & Chagpar, 2014; van den Beuken-van

Everdingen et al., 2008

And fear of recurrence is challenging to manage….

even for professionals.

• Beliefs are not irrational

• In a survey of 64 psychosocial professionals, over 90% found managing fear of recurrence at least somewhat challenging

• Over 99% were interested in further training in how to manage fear of recurrence

Butow et al., 2013; Thewes et al., 2014

Despite this, few psychosocial interventions have been designed to specifically target fear of recurrence

Butow et al., 2013; Humphris & Ozackinci , 2008; Mishel et al., 2005; Thewes et al., 2014

In fact, management of fear of recurrence is the

number one unmet need of cancer survivors

American Cancer Society, 2007; Baker et al., 2005; Hewitt et al., 2006; Hodgkinson et al., 2007; Johnson Vickberg, 2001; Mishel et al., 2005; van den Beuken-van Everdingen et al., 2008

Thus, there has been a compelling need

to develop interventions that directly target fear of cancer

recurrence

Johnson Vickberg, 2001; Mishel et al., 2005; van den Beuken-van Everdingen et al., 2008

A Promising Target: Cognitive Biases• Being attentive toward threat is often normative and

adaptive

• Higher levels of anxiety may be maintained by cognitive biases, e.g., attention and interpretation biases

• Vicious cycle: biases result in anxiety, and in turn, anxiety results in more biased information processing

• Difficult to modify threat biases in survivors through talk therapyBar-Haim et al., 2007; Butow et al., 2014; Glinder et al., 2007; Hewitt et al., 2006; Macleod et al., 1986;

Kaur et al., 2013; Miles et al., 2009; Ouimet et al., 2009; Owens et al., 2004; van den Beuken-van Everdingen et al., 2008

Cognitive Bias Modification (CBM)• Novel, brief, computerized intervention approach

• Rapid and repetitive computer tasks facilitate new automatic cognitive habits outside of one’s conscious awareness better than verbal methods

• Can be administered in users’ homes, is cost-effective, easily disseminated, does not have the side effects of medication, does not require a trained therapist, and takes relatively little time

• Can be personalized with a person’s strongest fears

• Has promise for cancer survivorsAmir et al., 2009; Beard et al., 2012; Hallion & Ruscio, 2011; Mogoase et al., 2014

g (T2 v. Control) * p ** g (T3 v.

Control) * p**

Experimental 0.35 .095 0.54 .005* Hedges’ g effect sizes are standardized such that positive values represent improvement.** Wald χ2 is derived from generalized estimating equations estimating the association between the group x time interaction and the outcome of interest (i.e., differences in change over time between the treatment groups and the control group).Sample sizes: Baseline: n=97 (Experimental: n=64 / Control: n=33)

Post-Intervention: n=78 (Experimental: n=50 / Control: n=28)Follow-Up: n=75 (Experimental: n=49 / Control: n=26)

Conclusions from Study• Both versions of AIM-FBCR appear to improve

health worries as compared to a placebo control condition; though the clinical significance of these findings is unknown

• Limited by small, homogeneous sample; challenges with computer program; and completion of sessions at home, meaning less control of testing conditions

• Plan is to create an “app” to improve ease of use and adapt for other cancer survivor populations

Notebaert et al., 2014; Simard et al., 2013

So what can you do NOW for Fear Management (FM)?

Trials examining interventions for fear of recurrence

• Conquer Fear (Butow et al., 2013): Ongoing RCT comparing 5-session individual intervention that uses blend of Meta-Cognitive Therapy and Acceptance and Commitment Therapy to relaxation

• Worry Less and Live Well after Cancer Treatment (WiLLoW) (Dunn, Shumay, et al., unpublished): RCT comparing 7-session Acceptance and Commitment Therapy group to treatment as usual

• Beyond Fear [part of Survivors’ Worries of Recurrent Disease (SWORD)] (van der Wal et al., 2015): RCT comparing 5 face-to-face and 3 online/telephone sessions of CBT to treatment as usual

• Mindfulness-based Stress Reduction (Lengacher et al., 2014): RCT comparing 6 sessions of MBSR to treatment as usual

• Gratitude Letters (Otto et al., 2016): RCT comparing 6 letter writing sessions to an online writing control condition

Butow et al., 2013; Humphris & Ozackinci , 2008; Mishel et al., 2005; Otto et al., 2016; Thewes et al., 2014

Create your own FM toolbox• Normalize and validate• Share and process• Make sense of your responses• Establish effective ways to

communicate with your healthcare team

• Use cognitive-behavioral techniques• Use mindfulness strategies• Redirect your attention• Find meaning in your life• Maintain COMPASSION

Normalize and Validate

• Give yourself permission to feel

• Use self-talk

• Check in with a friend, trusted family member, or other survivors

Don’t underestimate the power of sharing

Process your feelings and make sense of your responses

• Understand the context: we all bring our own

– Personal cognitive schemas and worldviews

– Past or ongoing life experiences and relationships

• Express emotions in helpful ways

• Discuss with others who are supportive

• Journal

Be compassionate toward the lens through which you view the world

Establish effective ways to communicate with your

healthcare team• What information do you need to know? (e.g.,

level of risk, when to contact team about symptoms, etc.)

• What is your provider’s recommendation about surveillance?

• When should you expect results after undergoing tests and scans?

• What is the best way to reach the office when you have concerns?

• What strategies do you think will get your needs met?

Cognitive-Behavioral Strategies

van de Wal et al., 2015

My cancer is going to recur.

ScaredAvoidance, checking, reassurance-seeking

Consider your beliefs about your anxietySelf-Regulation of Executive Function (S-REF)

Butow et al.., 2013; Butow et al., 2014

Fear of Cancer

Recurrence

Self-beliefs“I can’t handle this

anxiety.”

Meta-cognitions: Beliefs about the benefit and

danger/ uncontrollability of worry

“Worrying about cancer will help me be prepared for it.”“Worrying like this is going

to make me sick.”Existential concerns

“I don’t know what I should be focusing on in my life right now.”

Cognitive responses: Address distress with helpful

thoughts• Reframe thoughts related to both the

benefits and dangers of worrying

• Come up with helpful responses

• Minimize critical self-evaluation

• Be compassionate toward your thoughts – understand but gently eliminate the “should's”

• Ask yourself what kind words you would share with a friend or loved one in this situation

Change the meaning of the surges of anxiety

• Temporary

• Manageable

• Natural

Behavioral responses:Address distress with helpful behaviors

• Minimize avoidance where possible (including allowing thoughts as they emerge)

• Choose helpful behaviors with healthcare providers:

– What is my goal in this situation?

– What actions or communication approaches are most likely going to help me achieve this goal?

• Engage in pleasurable activities (keep a list to turn to!)

• Engage in relaxation practices (deep and calming breathing; progressive muscle relaxation)

Mindfulness Strategies• Moment-to-moment, non-judgmental

awareness: NOTICING

• Pay attention to the present moment (including thoughts and feelings) as non-reactively and openheartedly as possible

• Practice by concentrating on something, like your breath, using focused attention and your senses: notice its pace, sound, feel, temperature

Focus. Wander. Start over.

Leading with the mind:Using focused attention

• Mindfulness meditation websites

– http://www.mindful.org/meditation/mindfulness-getting-started/

– http://www.buddhanet.net/audio-meditation.htm

– http://marc.ucla.edu/body.cfm?id=22

• Guided imagery

• Apps like Breathe2Relax, Headspace, Buddify, Calm, Take a Break

Acceptance• Maintain compassion

toward one’s thoughts

• Allow them to “be”…try not to push them out

• Redirect your attention to the here and now

Walking the fine line between…

Accepting Your Feelings

while

Redirecting Attention

Takes practice to work that “flexibility” muscle!

Leading with the body:Use your body to discharge and

to bring you back to the here and now

• Progressive muscle relaxation

• Massage

• Acupuncture

• Exercise

Find meaning in your life• Write letters of gratitude to people in your life (Otto et al.,

2016)

• Make go-to lists to review during “moments”: – What are the activities and experiences that are most important

to you? What can you engage in when anxiety surges?– What are the values you hold most dear? – Who do you want to be in the face of the challenge of fear of

recurrence?

• Find meaning in how you face challenging situations and the attitude you choose:

The attitude you choose is what you always have control of

“Belief in a conditional world opens up the consideration of multiple possibilities since certainty is not absolute." Mishel, 1990 (p. 261)

Mishel, 1990

For cancer survivors…

“If everything’s okay next year, then…”

“Conditional” living can leave you feeling stuck….

“Figure Stuck between Two Walls” by William T. Ayton, 2009 

So, how does one get “unstuck”?

Image courtesy of suphakit73 at FreeDigitalPhotos.net

First, validate rather than criticize your feelings: this experience is HARD!

Then…

Consider the choice you have in how you create meaning.

“…everything can be taken from a man but one thing: the last of the human freedoms— to choose one’s attitude in any given set of circumstances…”

Frankl, 1959/1984

Viktor E. Frankl, M.D., 1905-1997

RESPONSIBILITY

Breitbart & Applebaum, 2011; Breitbart & Poppito, 2010; Frankl, 1959/1984

The ability to respond to the life you have been given.

COURAGE

Breitbart & Applebaum, 2011; Breitbart & Poppito, 2010; Frankl, 1959/1984

Moving ahead in spite of uncertainty.

He who has a why to live for can bear almost any how.

- Friedrich Nietzsche

Frankl, 1959/1984

What are YOUR whys?

Fear Management (FM):Cultivating compassion toward yourself

• Understand your personal context and lens

• Be mindful of and compassionate toward your emotional responses

• Develop a compassionate mantra or helpful response (“Of course I’m scared” or “Back to the moment” or simply, “Compassion”)

• Practice staying in the moment, allowing feelings and thoughts to naturally rise and fall, coming back to the moment, and living life meaningfully

The antidote to worrying about the future is

remaining in the present.

Questions? Thoughts? Concerns?

Thank you for your time and attention!